Friday, March 28, 2008

We are still here at my moms in Louisiana, we leave out tomorrow to go back home. I have really enjoyed my time here but I am so ready to go home! Cami has been in complete destruction mode since we have been here. Caleb has been sick with a cold all week and their heavy pollen down here is making it so much worse! On top of all that they both have had poor appetites since we have been here. Neither wanting to eat much of anything in fact its a daily struggle I'm just ready to give up. Its either mac n cheese or grill cheese this week, how much cheese can one person have! Sounds like a riddle. Oh and I bought hot dogs the kids favorite but it wasnt their normal kind Oscar myer with cheese in the middle. Instead I had to get what the store had and it was ball park hot dogs with cheese. Well have you know that neither one of my kids will touch the stinkin things! They are both so picky.

Now my last complaint will be is why do kids always come down with stuff while you are out of town? Story Caleb has been off and on complaining of leg pain in both his legs for about 2 months we always just thought growing pains. Well we get down here and on Tuesday morning he wakes up crying that his legs hurt the boy wouldnt even walk on them. Cried if I touched them and he had bruises up and down his legs. Well I call his Pediatrician and they just ask me a ton of questions. He then instructed me to take him to the nearest walk in clinic and have them run a CBC! SO this is 4:30 in the afternoon. My sister comes and picks us all up takes us to a clinic they know and I go in the woman is talking on her cell phone and just says real quick like are you new I say yes and she points to the papers for me to fill out. So me and Caleb are sitting and filling out papers for about 10-15 minutes I get up to give them to her and tell her the situation and she says oh why didnt you tell me they needed a lab ours closed at 5:00! I say well you where on the phone when I walked in. I just sat there and filled all these papers out for no reason. She said oh I will just shred it, she said you will have to go down the road here to Quick Care! Ok I'm so name dropping this place because it was the worst.... THE WORST place I have ever in my life been to. So if you are ever in Shreveport, La and need to see a Dr never got to Quick Care and see a Dr. Smith! I stayed only because I was worried for Caleb. Anyhow the Dr. was so incredibly rude that I couldnt believe he was even a Dr.

He says why would your Dr. wait till you got out of town before he started to run a test for the possibility of Leukemia. I'm like what I didnt even get that impression from our Dr. just maybe it was low sugar or something. SO I start to freak out a little bit. He just went on and on ranting about our Dr. when I'm trying to defend. Calebs Dr. didnt even know the pains he was having till Thursday when I took him in for his temp from a cold the day before we left. Which we didnt even see his regular Dr. it was a different one and the Dr says well was it in the same clinic I say yes, He says you recon they read from the same file. I said I guess so but I then say do you read your patients full file before seeing them, in which it wouldnt even matter because this leg issue was just brought up last week. Anyhow they run the test and it is now 6:00 and we are suppose to be meeting at my sisters house for a grill out. So I ask the dr. if I can send my sister home with Caleb and Cami and my neice while I wait for the results. He said just about as rudely as someone could possibly get No cause if he dose have Leukemia we are sending him to our Hospital or St. Judes....My response....Ummm no hes not going anywhere if he has something I will take him where I know we would get some descent care, he then slammed the door. I was furious! We waited 40 minutes and the test all came back fine his HGB hemoglobin was a little low but that was it. Have you know on Calebs papers he wrote injury most likely from just being a boy! Accckkkkk......I will never never never take my kids to another Dr. in Louisiana! My sister said she has had to see him before and said he was that way with her. SO why does this guy still have a license?

SO let me finally say that I'm so thankful for all the wonderful Dr.s we have in our lives who deeply care for my children! We have been blessed with a wonderful Pediatrician and Neurologist!

Thursday, March 20, 2008

Well today is Caleb and Camerans last day of school for 2 weeks for Spring Break, they are on a all year round schedule and I love it! Me and the kids are heading down to see my family for a week, our first Easter gathering with my side since the kids have been born. SO I'm super excited. My hubby unfortunately want be able to attend but when he picks us up next Saturday he has us prepared for another trip starting the very next day. He has made us reservations to Jelly Stone Camping park in Gatlinburg Tn( http://www.greatsmokyjellystone.com/ ). This will be our 1st long distance in the camper and our longest stay in it. We love Gatlinburg its beautiful and they have tons of activities to do along with trails and beautiful mountain sights, its about 4 hours from us. Caleb couldnt be anymore excited. At this particular campground it is kid based so they have theme weekends of movies, hayrides with Yogi bear, arts and crafts. SO it ought to bring another great memory in our book!

Cami still continues to do well in school. She is doing the cutest thing right now. If you ask her to dance she wil start moving those feet real fast like she is tap dancing across the floor. Its the cutest! Her Neurologist called yesterday with her lab results of her Depakote we had cheked while we already there. He said it was elevated again...105 last time it was 130 so not as bad but he still doesnt like it up. We are going to leave the med where its at right now since we are heading for out of town. After her sleep study is done and if it doesnt show her movements being seizures at night we will wean it down. Her liver looked fine.

Caleb is so ready for his Spring Break but says he will miss school too.

Me I'm so looking forward to a girls night out with my sisters tomorrow evening. And seeing all my family on Saturday and Sunday. I dont get to see them that often maybe twice a year. The only thing I'm not looking forward to is the 9 hour car ride. I recently took a fall at home this week. Tripped and fell down the steps in our garage hit the concrete garage floor pretty hard landed on my right side. Got quite a bit of bruises and a swollen ankle. So I cant imagine that ride being much fun. I tell you I could trip over the smallest thing, I'm just a walking disaster. Some might recall my incident this past summer trying to save a life jacket! My goodenss how much can a body take....LOL!

Well we wish everyone a Happy Easter cant wait to see some pics of all our little friends dressed and hunting for those eggs!

Wednesday, March 19, 2008

At The Dr.s appointment all went well. They just asked a million questions of her sleeping habits. How often does she wake at night? How long has sleeping issues been a problem? Does she sleep in her own room? How many hours of sleep does she get at night? What do we think is waking her at night? Describe what she is doing? How often does she do that during the night? Does she take in alot of sugar or caffeine? Does she nap during the day, if so how long? Does anyone in the family have sleeping issues? Does she seem awake or asleep? How does she wake, Happy, Moody? The list just went on and on. We were there for 2 hours! Then they just did a routine exam on her checking for body markings, reflexes and such. It was hard to answer alot of these questions because her sleep pattern is all over the place. Typically its a 20-30 minute fight to get her to sleep sometimes it takes an hour we start at 8:30 thats when Caleb goes to bed impossible to get her down before him. So she is most often in bed by 9:00-9:30 during the week sometimes its later. Weekends its whatever goes because Caleb is hyped up because he gets to stay up and it rubs off on her. So its not unusual for her to be up at 11:00 on the weekends but we do try to push 10:00 bedtimes of the weekends, doesn't really bother me because I'm a night owl but those nights to her are no different than the others she will still wake often. Now during the night goes as follows, lets take last night for example she fell asleep after a 20 minute struggle and that was 9:25. We put her in the bed and come 11:15 she started the tossing about and started screaming. So we got her and put her in bed with us. I know we probably shouldn't but its the only way we get SOME sleep if not we are up and down all night checking on her making sure she is ok during these movements. Well she tossed about and cried out every 30 minutes last night, she definitely isn't getting the sleep she needs. Ok now we do have easier nights and those consist of her being in bed by 9:30 and not waking till 2 or 3am but the rest of the morning is shot she will do the movements from then till my alarm goes off at 6:15. Now when I get up and get ready she is in a dead sleep then 6:50 she pops out of bed raring to go!Naps vary during the week, well the days she has school she has to be at school at 8:30 which our day has already started at 6:50 for her because as soon as those little feet hit the floor she is in the kitchen wanting her waffle and milk. Caleb has to be at school at 7:20 so I'm back and forth all day seems like. Anyways she gets out at 12:30 so after I pick her up we come straight home which is only 10 minutes away. Soon as we walk through the door she searches for her blanket and crawls up in my lap and is out in a matter of minutes. Now why cant she do this at night time? Now she only gets an hour and 15 minute nap because Caleb gets out at 2:25. Poor gal! On her off days she will take a nap anywhere from 20 minutes to a hour and a half, depending on how long I'm willing to hold her. Spoiled I know!!!!Well the Drs think it can be many of things Seizures, Restless Legs, Sleep Apnea, dreams and many other possibilities. We check in at 7:30-8:00 pm that evening they hook her up and they wake her at 5:30-6:00am and unplug her and we go home and wait for the results which take up to 3 weeks to go over the whole nights worth of testing . Now they will be placing many things on her. It says the purpose of a sleep study is to obtain various measurements during sleep(brain activity, EKG,breathing) So they use the following:*Electrodes attached to the scalp(at the forehead, behind the ears, around the eyes and below the chin). The wires are used to record sleep activity in the brain, eye movement and muscle tone. The wires are attached using an adhesive paste and cotton.*Electrodes attached to the chest and abdomen used to record heart rate.*Electrodes attached to the legs(just below the knees) to record leg and body movement*Elastic bands placed around the chest and abdomen used to monitor respiration*Nasal Tubing, similar to oxygen tubing, is used to monitor nasal breathing*A soft finger wrap is used to continually measure oxygen level*Oh and it will all be video tapedSo I made them promise they wouldn't laugh and tell their friends about my sleeping habits....LOL! I tend to snore when I 1st fall asleep and thats after 1-2 hours of trying to fall asleep, so maybe she gets it honestly because I toss and turn alot too! Only one parent is aloud in the room with her in fact no other parent may come into the room at all or siblings or they will cancel the appointment on spot. They say if she fights them while they try to put all the stuff on her they will wait till she is asleep but hopefully it want be a problem, shes always done well with all her EEGs.

Monday, March 17, 2008

You know I think every year I get that question if I have Irish in me since I have red hair. Not sure if I do is that bad I dont even know my heritage? All I know is that every year seems like I forget to wear my green and get pinched by the hubby and Caleb so I'll make sure I wear it today.I made sure I sent Caleb out in his green today hard to do when they have uniforms of red, white and blue! SO he wore it in his shoes he has rainbow colored shoe strings, so hopefully no one will sneak a pinch in :)

We are off to the Sleep Specialist today and I was beginning to wonder if I would have much to tell him. Cameran has been having some relatively good nights here lately. Shes been sleeping till 3 or 4:00am with no whining just tossing. But just when I thought she might be getting better last night she had a horrible sleep. Lots of crying out, flipping and flopping. I'm trying to see if there is a pattern here and to me I just dont see it. We stayed home all day yesterday so no changes. So Wish us luck we might need it!

Thursday, March 13, 2008

We wear our Silver ribbons for all our little Epilepsy Friends! We love you all!

Special Dates:*Saturday, the 15th marks Camerans 11 months seizure free. I have put a countdown clock on her page and hope you check in and celebrate with us on her 1 year of being seizure free which will be April 15th! We are so excited about all her improvements. She is doing so wonderful in school. We had her 1st Parent Teacher Conference yesterday and it went really really great. She is starting to complete tasks, like concentrating on one toy at a time then clean it up and move to the next. I've asked her about some signing Cami has been doing trying to figure out what it is and it seems she is picking up bits and pieces of stuff and making it her own in a way thats easiest. So if we work together maybe we can figure out what she is trying to tell us. I just noticed one day this week when I was singing the Clean up song she kept clapping after I finished and then pointed in a motion to her palm. I thought maybe she picked up a new way of signing for "more" but she would do these motions every time I sang that song. So I mentioned it to Mrs. M and she said they sign clean up by motioning hands in a rubbing sort of way then point up so Cami is pointing to her palm in a motion so weird how that came together but hey whatever works. We are just seeing huge improvements in her, its amazing.

*Monday the 17th we are taking Cami to Vanderbilt for the beginning of her sleep studies. We have patiently been awaiting this appointment. Cameran has had sleeping issues since the seizures started when she was 6 months old. She wakes alot during the night seemingly uncomfortable and crying out but never opens her eyes. Not sure whats going on but we hope and pray we get some answers so our baby girl can get some much needed rest.

*And this one for Caleb because he is super excited his school is taking a field trip next week to see Horton Hears a Who and is psyched that Mommy is tagging along.

~He got his report card yesterday and got perfect scores all the way across and she even left a note saying he is excellent in counting money. Thats one of the things they are working on in his class. They are also working on determining the differences in Liquids and Solids doing experiments and such and he really enjoys it all! I love that he loves school so much. Other things they are working on are Mapping, Learning American History, Double digit math adding and subtracting, learning the ones and tens place. He is excelling in reading and now reads me & Cami books, hes just growing up so fast, heck they both are, I'm so proud of these two.

Sunday, March 09, 2008

Sweet Sweet Cami brought her momma to tears the other day playing dress up! She has always shown interest wearing our shoes around the house so for her Birthday we bought her a pair of Princess dress shoes. Well Last week she finally showed interest in them, she wanted her footy pjs off so she could wear them so I was happy to oblige. Then I decided to pull out a dress for her and she was excited to put it on. Next is when my heart melted she went and grabbed her baby stroller put her baby in it and was pushing her around the kitchen and then would walk over to her play kitchen and push buttons open up doors and then PRETENDED to wash her hands! I was ecstatic my girl was finally playing in role play! HOORAY for Cami and you all know I took pics so here they are in a slide show, there are a few other pics on the slideshow before hand of the kids playing outside but be sure to stay to see the dress-up its so precious! My big girl is growing up!!!! Love you Cami!

Well Caleb finally got his 1st visit from her and he was thrilled. Thursday after school I picked him up and we headed down the road to the kids Pediatric Dentist, who are just wonderful! He was so excited, we pulled up and I could not get out of the car fast enough for him. He said hurry up Momma I love this place. Soon as we walked in they where ready to take us on back. Where he was happily grinning from ear to ear showing off his pearls to everyone. The nurse asked him to show her his loose tooth, where she then saw where both permanents had grown in behind them already she said oh yeah those both have to go so the new ones can come in. He walked in our room she slid out a drawer full of different scented Snoopy masks, he choose the purple/grape. He got up on the table they put the mask on him and started the numbing procedure. Of course I had no idea of how involved this procedure was, I've never even had a cavity so I was clueless to what was going to take place here. Well lets just say they have 3 numbing steps. The mask for 10 minutes, a q-tip placed in the lip with numbing cream placed there for 15 minutes then I looked down and hidden by her leg is a needle full of stuff. Ok catch me now, I could not watch. He had no idea what she was doing just told him he would feel some pushing and that was it. Let me tell you that boy sat there smiling the whole time had no clue she was sticking a needle in his gums...They are good! So she let that kick in for about 5 minutes and in that time his daddy came in to help out with Cameran and watch him loose these stubborn teeth he tried so hard pulling for 2 weeks now with no success! When he saw his daddy he said hi daddy and then said hey my Wip feels funnie(did you catch the spelling there, well thats exactly how he sounded) his lip was HUGE! So funny! Well it was time, she then called me over for the perfect picture opp(yes of course I had my camera) she said it would be quick. Well in 1 minute he was a cute little snaggle tooth. She put his cute little teeth in a tiny tiny little yellow treasure box that said Tooth Treasures. They flushed him out sat him up and he was good to go well with a slight lisp that is! She said she really had to tug on those teeth to get them out, surprinslgy she thought for as loose as they where. Said we would have never gotten them out on their own, well not before it messed up his permanents, now those newbies can move forward and grow perfect! Lastly he got to stop at the treasure box and pick out 2 surprises and even 1 for Cami. So that just made his day. So all in all not to bad $119.00 I'm keeping those teeth forever!Anyhow we got home and he ran and got his big tooth that he puts under his pillow it glows in the dark. He placed his teeth in there and placed it under his pillow and wished with all his might for 2 half dollars. Come Friday morning I heard Wow.....pit pat pit pat pit pat down the hall look mama she left me lots of money 4 half dollars and 2 dollar bills well he said a 5.00 one and a 1.00 one so thats $8.00 ummmmm lets see I know how much that is its $4 a tooth! Way to go Caleb you must of had some beautys! He of course had to take it for show and tell to school and they where all so excited for him now he fits in with the rest of them. Oh forgot to mention he had a Salute to American History 1st grade program that night and he did such a wonderful job singing and dancing his little heart out on the front row! Mommys Big boy!

Tuesday, March 04, 2008

We are at a losing battle with Calebs loose teeth. His 2 bottom middle teeth have been loose since December 14th and they have yet to fall out. These are his 1st loose teeth! We have tried so many techniques to get them out and they will not budge. I see so many kids at his school come in on a Friday and say look at my loose tooth and by Monday its gone! All I have to say is that he must have some really strong roots or long ones. We work on it every night and still come up empty handed and he is growing anxious everyday. His permanent teeth recently popped through behind both baby teeth so I called the Dentist and he has an appointment for Thursday. Now you know it couldn't be that simple as just going in and them pull it. Well our insurance only covers their every 6 month cleaning/check-ups or surgerys so we have to pay! I'm going to tell you right now that one day I'm going to be a Dentist! They charge $107.00 to pull the tooth and its $31.00 for the Snoopy mask you know to numb it up! I'm thinking the tooth fairy might not see a tooth because I would have already shelled out 138.00 for it! Is that not ridiculous its a tooth, man if the parents got that much money every time we pull one we would be sitting pretty!

He has a 1st grade American History Program that same evening so I'm sure the video will be adorable of his some what snaggle tooth grin. Man I cant wait to have those things out, I just hope this doesnt happen with every tooth. I'm just happy hes never had a cavity or any other problems! Oh and let me not forget to mention how crazy it makes Cami to hear her Bubba squeal everytime we try to pull it out! Sends her over the edge she cant take it and screams at me and Jason till we put him down, she so protective over her brother!

Camerans Infantile Spasms:

I started this blog 7 years ago for my daughter Cameran(Cami) who was diagnosed with Infantile Spasms when she was 6months old. It was a very difficult time in our lives so I reached out here and found an amazing amount of support. Even though Cami has been seizure free for 5 years and has outgrown her I.S. I still post for others too see that there ishope, these children can get better it just takes lots of patients and lots of love! Cami still has developement delays, she has Generalized Epilepsy and a new diagnosis of ADHD but I tell ya those things do not hold her back. She is an amazing little girl who surprises her mommy and daddy everyday!~Welcome to our blog~ For any wanting info on her meds, epilepsy in general or any of Camerans medical equipment, I have it all listed below. If you have any questions feel free to e-mail me, Karen at jk98hayes3@att.net